Sunday, December 03, 2006

Becoming a Carer: 10 Easy Steps

Now, O272 has asked a good question:

Did you foresee this happening? Is it something you had to take into consideration when you opted to spend your life with him? I know you said his illness has gotten progressively worse, but I wonder if things have turned out as you had planned. Did you think you could handle it back then or did you not see it coming at all?

The Big Dude wasn’t sick when we feel in love. He was older than me, it's true, and I recognised the potential for a caring role later, much later. But I certainly never expected it to begin in his forties. He was a superbly healthy and fit man when we met. He had hardly ever been to a doctor in his life. He looked a least a decade younger than he was. He was incredibly attractive and sexy. A friend of mine said that he had the strongest sexual presence of any man she had ever met.

When I look at our life together, especially our sex life, it seems to have happened so inexorably. It's all clear in hindsight. But at each stage, it was not at all easy to see what was happening. I often ask myself if I have done the right thing by myself by staying, but I am just wondering at what point any of my readers would have left him?

Step 1. You meet the most interesting, caring, loyal man you have ever met before. You feel an intense physical, mental and spiritual attraction. You tell yourself it's just a fling and so the age difference doesn’t matter. The sex, which happens virtually every day, is fantastic.

Then you both fall deeply in love. This wasn't what you intended. But you have never felt so loved, so desired, or had such a good friend, and neither has he. Would you leave him now?

Step 2. He gets pneumonia. He needs a bit of looking after for a few weeks. He is so unused to being sick that he doesn't even see a doctor. Is he too much trouble, yet? Would you leave him now?

Step 3. He seems largely recovered and things go back to normal. Your relationship deepens. You move in together. You have so many common interests, so much laughter, so much love and tenderness. You are happier than you have ever been. You gradually realize you want sex about five times a week and he wants it about 2-3 times, but the quality is excellent. He thinks the decline in frequency is because he is still not completely well, although he is recovering slowly but steadily. Is this small difference in sex drive enough of a reason to leave him now?

Step 4. He gets glandular fever. He has never had it before, in the same way that he has had virtually no other illneses before. Poor thing – over forty years of perfect health and now two illnesses in a row. It's a good thing you learned a bit about taking care of him last time. The sex falls to about once per week. You discuss it, but he is sure than he will be better soon. It is hard for him to believe that he is sick in the first place. Would you leave him now?

Step 5. He doesn’t seem to fully recover. The sex falls to about once every ten days. You feel hurt. You feel undesired. You sulk a bit. You discuss it again. You think that, surely, he will be better soon. The rest of the relationship is pretty happy, despite the fact that his former superb energy doesn't seem to have returned. The athlete you fell in love with is having to learn to be content with his other interests, like reading. You are having to do more for him, or his health seems to deteriorate. You love him and he loves you. You recognise it can take a while to get over glandular fever. Would you leave him now?

Step 6. It's been a few months and he is still not fully well. The sex falls to about once every three weeks. But you are so close in other ways, and in fact the crisis seems to have brought you very close together emotionally. Your friends envy you because you two seem to love each other so much more than the average couple. You are getting used to the caring role. And sometimes he is almost well and the sexual frequency improves. He is diagnosed with post viral syndrome and told he should recover in the next few weeks or months. Would you leave him now?

Step 7. He is diagnosed with chronic fatigue syndrome. The sex has fallen to about once per month or less, but it’s a relief to finally have a real diagnosis that recognises the seriousness of the problem and some courses of action. Most people recover within two years. Some unlucky people don't. Surely, having enjoyed excellent health for most of his life, as a healthy eater, an athlete, a non-smoker, a teetotaller, a man with a lifetime of good habits, he will be one of the lucky ones?

And you have a lot of hope for your future together. You have been living together for two years now and you've been mostly happy. You're not loving the carer role or the decline in your sex life, but the two of you love each other more than ever. The more you know him, the more you realize what a truly fine person he is. You would marry him, if you believed in marriage. Would you leave him now?

Step 8. It's been three years. It is finally becoming clear that he is not a fundamentally healthy person who is having a run of bad luck. He is becoming a chronically ill person. He has tried most recommended treatments. Some work for a while, some don't. Nothing works for long. He starts to lose his former complete confidence that he will get well. He is getting depressed. He is having trouble getting up in the morning. He feels he has no life.

You love him and you want to help him to keep his spirits up. You don't even mind looking after him. But there is one key problem. The sex has fallen to about once every couple of months and sometimes less. You feel frustrated and alienated, and you can’t understand how this is happening. You feel so undesired. You feel so sad. It used to be so simple - he wanted you and you wanted him. Now you still want him, but it is not at all clear how he really feels. He is the strong and silent type. He is not good at talking about his feelings. And he is not sure he really has any feelings, except for feelings of being sick and tired all the time.

You both get frustrated. You understand he is sick but, hey, a woman has needs. He understands how you feel, but you seem to be thinking about sex all the time - it's like you don't care about him, only about sex. He still loves you and you still love him. Would you leave him now? Or is this just a "bad patch"?

And, in any case, would you leave your best friend, the man you love, who has stood with you through every problem, to face this crisis alone?

Step 9. His father dies. He retreats more and more into sadness and depression. He hardly talks to you any more. The sex falls to a few times per year and even that isn't very good. He sees a counsellor and it seems to help a bit, but the service is really for individuals, not for couples. Every time you raise how unhappy you are, any needs you might have, he looks pained and guilty but says he can't understand how a person who is healthy, who has a life, can claim to be unhappy. You ask him to see a couple counsellor or a sex therapist. He asks if either of those professionals would have a cure for his illnesses and refuses to go because it wouldn’t do any good, anyway.

You finally fully realize what is happening to your life. This is not a temporary crisis, but a new life of the kind you never wanted. You are becoming a carer – a nurse, rather than a lover. You have fallen in love with a chronically ill man and you may be caring for him for the rest of your life. And you may be doing without sex for the rest of your life.

You are only 24 years old.

You are like a strong swimmer who teamed up with another strong swimmer - a known survivor, who has spent all his life helping other people. The other swimmer falters. You stay with him. You talk him through it. At his weaker moments, you carry him along. Surely, surely you will get to the shore soon. And suddenly, he is drowning and he is pulling you down with him.

You are sinking into depression yourself. You are really struggling. You are putting on weight because only food and alcohol seem to make you feel better. You realize how badly you are coping. You know things could get even worse. You are full of love and pity for him, but you are worried about yourself.

You have dreams about tidal waves crashing over you and about losing control of cars - dreams about loss of control of your life. You dream about a man who is half-dead and who is trying to shut you into a coffin with him.

Would you leave him now? Do you even have the emotional energy to leave him now?

Step 10. You pull yourself together. You see a counsellor. You lose weight. You get fitter. You cope better. But the fact is, he is only getting sicker. He is diagnosed with a couple of other illnesses - linked with service in Vietnam. In fact, you read about people with chronic fatigue syndrome who have been exposed to pesticides, and you wonder about the Big Dude and Agent Orange. You wonder if a man who has barely slept in thirty years has any real chance of recovery from any of his illnesses. You look around at the other Vietnam veteran families you know, and illness is a major theme - the trauma, the lack of sleep, the exposure to toxic chemicals, it all seems to be catching up with these men as they get older and their defences wear down. Many of these men and their families are far worse off than you. The women look haggard.

For yourself, you are now coping better, but the distance between you is increasingly hard to cross. You are not even sure if you want to cross it. You have a lot of polite conversations. By this time, the sex is virtually non-existent.

You meet someone you find attractive. Someone with many of the qualities of your man when he was well – highly intelligent, funny, caring. You feel good when you are with him. He makes you laugh. And he really, really desires you. You realize that you had forgotten what that was like - that spark of spontaneous attraction, that breathless euphoria.

And you want to escape your life. You really, really want to escape. Would you leave him now?

I did. I have covered some of what happened next here, here and here.

I retrace my steps and I can see how I got here. But sometimes it seems like there was only one step: continuing to love a man who was unlucky enough to get sick. The easiest way to become a carer is to care about someone.

We all hope that, if we got sick, the one we love would care for us. We wouldn't want to be sick and alone. But no one wants to be the carer.


Blogger O272 said...

Thanks for answering my questions, Emily. It certainly sheds a lot more light on your situation.

7:10 PM  
Blogger Rob said...

"Would you leave him now?"

Of course you couldn't leave your guy - as the vows go (married or not): in sickness and in health, till death do you part.

It's hard to give you suggestions on how to enjoy yourself sexually, given your love for him. An open marriage as the answer? I dunno. Maybe. Maybe not.

7:49 PM  
Blogger Lickety Split said...

Emily, I will say that I have no easy answer for you. Your story is one of dedication to the man you love. Although my situation is not nearly on the level of yours I often ask myself "how the hell did I get here?".

The truth is we make decisions based on the best information available at the time. BD has a lot of medical problems and I am not sure if lumping them into some of the diagnoses you report is doing justice to the level of illness. I can't tell you whether BD truly has "chronic fatigue syndrome" or whether or not it could be something else but there is two things here that bother me. One is the apathy he seems to show. (Perhaps that's just my impression). Second, it's one thing for him to be in a pit and it's another to drag you into it with him.

I will say that marital vows are important. Within that framework are options such as counseling that you've explored but does he really WANT to be better? You are young. If sickness and in health means he gets you ill in the process,...that's not good. You have to weigh all of your options.

I don't want to blog hog with this commentary but I consider you a favorite and it pains me to read that you are less than fulfilled. I know you care but you must also care for Emily's soul and body too.

Hope this doesn't sound like psycho-babble.

9:55 PM  
Blogger Emily said...

Rob - I did leave him, for a few years, and then I came back. The events I described in this post are a decade ago, now. I don't think I would leave him again. Certainly not lightly, despite the absence of vows.

To tell you the truth, I'm not sure I'd want an open relationship, even if my Big Dude would go for it, which he wouldn't. I do want more sex, oh I do, but I don't actually want an emotional entanglement with anyone else and sex without emotional connection isn't necessarily a solution (or always possible).

Plus, my Big Dude's manhood has taken a lot of hits in the last decade or more - I love his masculinity, his security in that, and while there may be men who wouldn't take an open relationship that way, I know that he would. And I just can't do that to him.

Lickety - You are very sharp, I wondered if anyone would pick this up! The Big Dude has been diagnosed with a number of health issues beyond chronic fatigue syndrome, which was the first diagnosis. I haven't named those conditions, because they are specific enough to make BD more recognisable than I am comfortable with.

I agree on the apathy issue. He says himself he can't understand why this is often the case. He never used to be apathetic, but I think lack of energy, lack of sleep and the general issue of some depression don't help on that front. Sometimes I just want to light a bomb under him!

As to being dragged into a pit, we are well over the pit described at the end of this post, but sometimes we do seem to fall part-way back in. We are currently hauling ourselves up again from the latest episode.

I am really touched by your concern for my body and soul. I don't think either of mine are in imminent danger, but then I don't think they are doing that great, either. I'm not ill, I don't think I'm depressed, but I am semi-haunted by sadness and would be feeling very isolated if it wasn't for this blog.

I do believe my BD wants to get better. We still do what we can to help him get better. In the last year, he's had serious sleep treatment (he's now hooked up to a sleep apnoea machine at night), explored testosterone supplements (the specialist says he can try them if his latest test results come out as expected) and is currently trying anti-depressants and gentle exercise and seeing a psychiatrist (upgraded from the counsellor-level support). The slump in his health this year is partly due to an experiment with other drugs that didn't go the way we hoped.

So we keep trying and we keep hoping. He continues to be adamant that he will get well. But it's now almost fifteen years since he first got sick, fifteen years of attempts to get well, so I can't say I'm confident of fundamental improvement, although some improvements are always possible. And I try not to be a wet blanket about his optimism, because I think he needs it.

11:57 PM  
Blogger Satan said...

Is he on a CPAP machine? Is it doing anything for him?

Sounds like you need a carer, yourself, Em! I'm hoping for some relief for both of you soon.

4:56 AM  
Anonymous loz said...

this is a great illustration of your story. I wonder too, how - how? - could one leave a situation like that? tough one to live with & I couldn't ever blame or judge anyone if they did leave. what a tough thing to live with.I hope the two of you find some solutions to getting back some of the former quality of your relationship that might still be missing.

thanks for coming by & leaving me a note :). I still love reading you, I'm just busy & having a hard time keeping up with all my faves!


5:10 AM  
Anonymous loz said...

ps: I wanted to email you about a couple things that maybe could help, so I checked your profile but didn't find an address. if you don't mind sharing it, would you please email me at loz {{at}} no worries if not, up to you.

5:13 AM  
Blogger Desmond Jones said...

I don't have anything terribly profound to offer you, Em. As I've been saying a lot lately, life just seems to be more heartbreaking than we planned on.

Can I say that I admire you - a LOT - for seeing your commitment to the Big Dude through "better or worse, sickness and health"? As I get older, I see some of my friends starting to get tapped on the 'worse' and 'sickness' sides of their vows. And I know that, inevitably, either Molly or I will end up doing for the other just what you're doing for the BD.

I echo Lickety Split - we make our decisions as best we can, based on what we know at the time, without knowing where they'll take us in the future. And it's integrity that moves us to see the implications of our choices all the way through.

Not much comfort, I'm afraid. I'll offer you a big, warm hug, but I can't 'make it better' for you.

{{{big, warm hug}}}

7:00 AM  
Blogger Finished Last said...

Thank you for sharing your story. Life thows us some curves and we have to deal with them. From what I can see in your blog you are doing a great job even though at times it must not feel like it. I admire you.

8:32 AM  
Blogger trueself said...

I have tremendous admiration for you. I often wish I could be more like you in the choices in my relationship, but then again BD sounds so different from W that there is really no comparison.

{{{great big hug}}}

9:21 AM  
Anonymous Cat said...

I don't have anything to add but I can certainly relate to the frustration. There are just no easier answers in this. And worse even when you make the hard choices they are still difficult to live with.

Hugs to you...

12:29 PM  
Blogger LePhare said...

You know I'm a 24/7 carer for my wife. I've watched her condition deteriorate slowly over the last 15 years. The biggest step downs have been when she has been hospitalised. She has always come home with less than she had.

She now spends about 20 hours a day in bed, is catheterised and I take care of all bodily care and functions.

It's not something that I signed up for and not something that we ever considered in the early years of our marriage. Luckily, illness is something I can deal with, and I remember the promises we made to each other, all those years ago.

Our sex life is zero but there is a lot of love in our relationship, and a lot of laughs. It's up to each one of us to find our own way through life. There is no easy way for people in our situation and no easy answers. I just take it a day at a time. It's all we can do.

Would I walk away? No, I couldn't do it.

4:45 PM  
Anonymous therese in heaven said...

reading through all your different steps, none of them seem like THE one that would make it easy to walk away. Heaven knows, I can relate to seeing your life take a drastically different and difficult turn you weren't planning on, and at a very young age.

I can't offer any advice. I truly hope that either something in your situation can change or there is way for you to find happiness with how things are.


7:23 PM  
Blogger Emily said...

Wow, so much admiration. You do realize I haven't always behaved well, right? You know what a pathetic whiner I still am, right?

I am truly grateful for all the supportive commentary, but I am feeling slightly disoriented because it feels like you must all be commenting about a much better person than me... And how LePhare, in his situation, manages to refrain from slapping me, I don't know.

But thank you for listening. Thank you for not telling me how bad a whiner I am. Thank you for caring about me. I mean it - thank you.

3:17 AM  
Blogger freebird said...

Thank you for enlightening us. Your post has (mostly) answered my question of a few weeks ago. An email might be on its way to you soon!
Hugs from me too.

3:40 AM  
Blogger FTN said...

Thanks also from me, Emily, for posting this. It was enlightening, and a good testament of your love for him.

7:16 AM  
Blogger LePhare said...

Wouldn't dare slap you, or judge. Each situation is different, and I've grown into it with the knowledge of what it could bring. Big hug.

4:41 PM  

Post a Comment

<< Home